Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndromehttp://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Naturopathy: Happy Anniversary to Me and Dr. Upcott

It has been seven years since Jody Smith began seeing her Naturopath Doctor. Time then for a brief reflection on the extent to which a variety of interventions may have helped move Jody forwards in her own battle with ME/CFS...

Naturopathic Doctor,
Kelly Upcott​

February, this year, marks seven years since I began seeing my naturopath, Dr. Kelly Upcott. For six and a half years, I saw her every month, and if, for some reason, there was five or six weeks between appointments, I would begin to deteriorate rapidly. But all that changed last summer.

Circumstances prevented me from getting in for two months, and we were both pleased to find that there had been no setbacks. We scheduled my next appointment for three months later and again found that I was fine for that long a stretch.

For the last couple of years, most of what we did during my visits was a half hour of conversation about how things had been, and half an hour of acupuncture.

In the beginning, things for were very different for me than they are now...

I was dealing with a lot of pain. I needed pillows on the armrests of my chair, which she kindly provided, to protect my sore arms and hands. My memory and cognitive function was so poor that she had to write down everything I needed to remember from the appointment. And my husband would drive me home after each appointment and I would be straight off to bed - to recover from utter exhaustion and cognitive collapse.

My treatments

The first supplements she put me on were vitamin B12 (methylcobalamin), omega-3 oil and a tincture from her office called Deep Immune and then after a few months, she gave me some little black things called 'ear seeds' for auricular therapy (see link below).

She taped two in specific acupuncture spots in each ear and instructed me to press on them frequently throughout the day. This pressure was supposed to help regulate internal organs, their structures and functions. When any of the seeds came loose, I was to replace them from the little box of seeds she sent home with me.

Naturopathy appointments used to exhaust me to the point that I would spend the next day or so in bed to recuperate. But by about my fifth visit, my recuperation time had decreased to only one day in bed. Then it soared back up to a couple of days recovery time after she introduced acupuncture, sticking needles in specific locations in my face, top of my head, ears, and spots along my arms, legs, in my hands and feet.

I went home after the first acupuncture treatment in a fog, and sometimes things hurt worse for a few days after a treatment. This was the case for several months of acupuncture. But, eventually, I was able to come home from acupuncture feeling no ill effects.

I had already been on a low carb diet for five years which I think had helped to reduce many of my cognitive, digestive and neurological symptoms. To help with a leaky gut and a poor digestive system, she had me start juicing, and advised me to get some liquid chlorophyll, to be mixed with a glass of water daily. To aid in detoxification and relieving the overload on my liver, she suggested I get a loofah and practice dry skin brushing.

To reduce congestion and pain in my throat and in the glands under my ears and in my neck, she gave me a jar of Lymphagen ointment which promotes lymph movement. It made a difference almost immediately. My nose would start to run, and the phlegm in my throat would break loose within minutes. And the chronic soreness and congestion gradually went away over a period of a few months.

Using sinus lavage (normally recommended to be done with a 'neti pot' but my turkey baster did just fine) with water that had been boiled and cooled along with a little salt, ultimately ended the last vestiges of vertigo, as well as the 'ticking' and 'squeak' I used to hear in my ears (see note below).

By the end of the first year of naturopathy, I no longer had intense pain and stiffness in my hands. I no longer had to go to bed for two hours at a time, three times during the day. I no longer had chronic sore throats, ear aches and congestion in my ears. My ability to think was returning, and I was no longer so dizzy or so disoriented as I went about my tiny day. The feeling of vibrating all the time was drastically reduced.

I went in to see her that first time in February of 2007 with no hope. In a matter of a few months, I began to think that maybe there was something more, something better, in my future. So far, so good.

Please note: When practicing sinus lavage, it is important to use distilled water or water that has been boiled and is sterile. Plain tap water can contain bacteria, leaving you vulnerable to possible infection. Two people died in the United States in 2011 after flushing their sinuses with tap water from a resulting infection.

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The article avoids definitive claims with 'I think', 'may' and 'supposed to' type additions... but some of this stuff still seems a bit off the wall.

She taped two in specific acupuncture spots in each ear and instructed me to press on them frequently throughout the day. This pressure was supposed to help regulate internal organs, their structures and functions. When any of the seeds came loose, I was to replace them from the little box of seeds she sent home with me.

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So you were sold magic beans?

It's always great whenever someone's health improves, but attaching stories to this can end up misleading others. Great for Jody to be feeling better though, whatever the cause!

Esther
Not quite sure what your point is, there is hardly any 'scientific' evidence for most treatments by CFS practitioners. Most have a 'try this and see if it works' attitude and learn what has worked for their clients over time, this the way that even the most famous CFS practitioners work, ones charging $500/hr and charging an arm and a leg for countless tests.

Esther
Not quite sure what your point is, there is hardly any 'scientific' evidence for most treatments by CFS practitioners. Most have a 'try this and see if it works' attitude and learn what has worked for their clients over time, this the way that even the most famous CFS practitioners work, ones charging $500/hr and charging an arm and a leg for countless tests.

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Yeah - it always feels a bit dodgy criticising what someone thinks helped them get better... but to me, it seems more dodgy to be charging $500/hr for treatments that lack in a compelling evidence base!

Jody
Thanks for all the detailed info on your treatment. The most important thing that comes across from your story is something that we all need to learn- patience. The great temptation is to jump from one form of treatment to another without allowing sufficent time to really decide whether the form of treatment is really doing us any good and should be dropped.

You seem to have found something that has steadily improved your health over a period of years and thats the most important point. We all start out thinking there is going to be a 'magic bullet' and have to settle for the longer haul.

BTW, If your still eating a lot of meat take care if you eat moose and deer , they have very high levels of the heavy metal cadmium, particularly in the liver and kidneys, which can disrupt the energy levels of CFS patients far worse than most non sufferers.

$10 methyl b12 shots and inititial office visit $120. ($80/hr.) OMG! I'm in love. She not trying to put her children through college on the back of one client. Though I'm not quite sure what "subject to HST" means. Canadians? I reserve the right to change my mind.lol........ Nice story.

Jody
Thanks for all the detailed info on your treatment. The most important thing that comes across from your story is something that we all need to learn- patience. The great temptation is to jump from one form of treatment to another without allowing sufficent time to really decide whether the form of treatment is really doing us any good and should be dropped.

You seem to have found something that has steadily improved your health over a period of years and thats the most important point. We all start out thinking there is going to be a 'magic bullet' and have to settle for the longer haul.

BTW, If your still eating a lot of meat take care if you eat moose and deer , they have very high levels of the heavy metal cadmium, particularly in the liver and kidneys, which can disrupt the energy levels of CFS patients far worse than most non sufferers.

You make an important point about patience. I have not often had quick results with any of the treatments I have used, but many of them have made a difference over time. I also had to give up on finding one magic bullet, and have instead found that it seems there have been a number of factors that have contributed to my having been so sick and it has taken a number of different practices to move toward healing.

I used to eat a LOT of meat when I first went low carb several years ago. I craved it, and I also found that though I was eating a couple of pounds of meat a day back then, the excess weight I'd been accumulating also started to drop off quickly and easily. I've slowed down considerably on the amount of meat I seem to need.

Wondering about moose and deer because I live in Canada? I guess if anyone in my house was a hunter, deer might be a possibility. We'd have to live much further north to find any moose though I think. Or west maybe. Anyway, they aren't in my area. I appreciate your caution on this though, and thank you for your concern for my wellbeing.

$10 methyl b12 shots and inititial office visit $120. ($80/hr.) OMG! I'm in love. She not trying to put her children through college on the back of one client. Though I'm not quite sure what "subject to HST" means. Canadians? I reserve the right to change my mind.lol........ Nice story.

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Hi Shah,

She's got pretty reasonable rates from what I have seen. She is one of those people who are genuinely interested in helping people get better. I have never felt rushed by her, have always had the feeling that she has all the time in the world for me (though I know that can't possibly be true) She has a profound respect for her patients and it shows.

I hadn't run into that type of respect from my old family doctor (who has since retired thank goodness). I have been lucky to find her.

One of my favourite quotes (and mentioned on my PhotoBlog) is...........Those who say it cannot be done should not criticize those who are doing it!

Most patients with ME/CFS and/or FM have differing symptoms, as well as various degrees of severity with their symptoms. Genes, age, physical appearance and mental capacity vary with every single person - even identical twins. Therefore it's not unreasonable to suggest that we all need a variety of treatments - what works for some, may not work for others.

And then there are other medical conditions that the patient might also have at the same time e.g. I have severe Hypertropic Cardiomyopathy - an inherited condition on my Mother's side of the family (for which I am closely monitored and take meds). I have also been diagnosed with Diabetes (the females on my Father's side of the family), but do not need meds yet (probably my diet & exercise is keeping that at bay). My body controls my blood glucose levels really well at the moment (and has done since diagnosis in May 2012).

The Paleo Diet (no dairy or grains) works best for me - similar to what Jody eats. I am lactose intolerant and am symptomatic with grains. I used to eat a little dairy & rye sourdough bread to keep up some sort of tolerance for the occasional meal, but 3 years of severe heart symptoms and surges in dangerous levels of BP have led me to do more experimenting with diet and I'm back to 100% dairy & grain-free. This works for me (as it does for many other FM sufferers). I even noticed that slight stiffness in my joints has gone (as well as the pain).

With the Paleo Diet, the important thing is to eat 'lean' meat, as modern man does not do the daily exercise and hunt the wild lean animals (that our ancestors did). Most older or middle-aged folk need a calcium supplement anyway. Modern man is generally too sedentary/indoors to get the exercise and/or sun exposure to promote the uptake of calcium and Vit D.

I have been taking a well-rounded calcium/magnesium supplement for over 25 years and that, together with some calcium foods and weight-bearing slow walking, has shown, by the last full bone-density scan, that my bone density is 94% (well above the average for a Caucasian middle aged female, which is usually 85% or less).

I am not cured, but I have found out by trial & error what works for me (to be the best I can with chronic health conditions).

I think long term ME/CFS/FM sufferers should be open-minded and willing to try anything. Most of my improvement is purely through my own research and study of diet, alternative therapies and exercise (which I can tolerate). I have chosen NOT to pursue expensive trials, doctors and specialists. I did a little of this in the past and found them not only unhelpful, but downright narrow-minded in their approach, and in one case, dangerous. There is a time and place for medical specialists and hospitals - been there, done that.

I even finally agreed to a Diabetes Dietition specialist (which was covered by Medicare) and found him to be narrow-minded and dismissive of my tried & tested dietary approach. He insisted on 'x' foods and meal sizes which I am unable to tolerate. I have proved conclusively that dairy/grain free works for me. I tried his approach (briefly) and put on so much weight, increase in pain and 'brain fog' I couldn't function. And what was worse, was that a large intake of grains made me depressed and altered my positive outlook to a dreary negative angry demeanour. Within days of deleting wheat (in particular), I was back to my positive 'can do' outlook on life.

Fortunately, I have a wonderful GP who listens carefully and supports me.

Fwiw, I had the same reaction @Esther12 did to that part of this article. BUT I realize that not everyone is going to agree with what I've found helpful either.

I have to applaud @Jody for posting what worked for her despite knowing it may get a few eye rolls.

Congrats on your progress. tc .. x

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I've gotten used to the occasional eye roll, xchocoholic. And, as Liverock and Vicki have already talked about, I really am not concerned by it, because I have been getting healthier these past several years. As long as I am getting better I have no problem with what other people might think is good, bad, weird or whatever.

I should mention that I couldn't say whether or not ear seeds did me any good or not. It was part of the treatment plan suggested for me, and I did it. Didn't do me any harm, and I had been surprised by a few other things I didn't think would work, that did me a world of good. I knew by then that if I wanted to find ways of becoming healthy, I was going to have to foray into things I wasn't familiar with. If I just stayed with what I knew, I was going to go nowhere.

One of my favourite quotes (and mentioned on my PhotoBlog) is...........Those who say it cannot be done should not criticize those who are doing it!

Most patients with ME/CFS and/or FM have differing symptoms, as well as various degrees of severity with their symptoms. Genes, age, physical appearance and mental capacity vary with every single person - even identical twins. Therefore it's not unreasonable to suggest that we all need a variety of treatments - what works for some, may not work for others.

And then there are other medical conditions that the patient might also have at the same time e.g. I have severe Hypertropic Cardiomyopathy - an inherited condition on my Mother's side of the family (for which I am closely monitored and take meds). I have also been diagnosed with Diabetes (the females on my Father's side of the family), but do not need meds yet (probably my diet & exercise is keeping that at bay). My body controls my blood glucose levels really well at the moment (and has done since diagnosis in May 2012).

The Paleo Diet (no dairy or grains) works best for me - similar to what Jody eats. I am lactose intolerant and am symptomatic with grains. I used to eat a little dairy & rye sourdough bread to keep up some sort of tolerance for the occasional meal, but 3 years of severe heart symptoms and surges in dangerous levels of BP have led me to do more experimenting with diet and I'm back to 100% dairy & grain-free. This works for me (as it does for many other FM sufferers). I even noticed that slight stiffness in my joints has gone (as well as the pain).

With the Paleo Diet, the important thing is to eat 'lean' meat, as modern man does not do the daily exercise and hunt the wild lean animals (that our ancestors did). Most older or middle-aged folk need a calcium supplement anyway. Modern man is generally too sedentary/indoors to get the exercise and/or sun exposure to promote the uptake of calcium and Vit D.

I have been taking a well-rounded calcium/magnesium supplement for over 25 years and that, together with some calcium foods and weight-bearing slow walking, has shown, by the last full bone-density scan, that my bone density is 94% (well above the average for a Caucasian middle aged female, which is usually 85% or less).

I am not cured, but I have found out by trial & error what works for me (to be the best I can with chronic health conditions).

I think long term ME/CFS/FM sufferers should be open-minded and willing to try anything. Most of my improvement is purely through my own research and study of diet, alternative therapies and exercise (which I can tolerate). I have chosen NOT to pursue expensive trials, doctors and specialists. I did a little of this in the past and found them not only unhelpful, but downright narrow-minded in their approach, and in one case, dangerous. There is a time and place for medical specialists and hospitals - been there, done that.

I even finally agreed to a Diabetes Dietition specialist (which was covered by Medicare) and found him to be narrow-minded and dismissive of my tried & tested dietary approach. He insisted on 'x' foods and meal sizes which I am unable to tolerate. I have proved conclusively that dairy/grain free works for me. I tried his approach (briefly) and put on so much weight, increase in pain and 'brain fog' I couldn't function. And what was worse, was that a large intake of grains made me depressed and altered my positive outlook to a dreary negative angry demeanour. Within days of deleting wheat (in particular), I was back to my positive 'can do' outlook on life.

Fortunately, I have a wonderful GP who listens carefully and supports me.

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Hi Vicki

You and I have had some similar health problems, and some similar improvements. We also have many differences in symptoms and reactions to various treatments as well. You and I are a great example of what you said here --

"Most patients with ME/CFS and/or FM have differing symptoms, as well as various degrees of severity with their symptoms. Genes, age, physical appearance and mental capacity vary with every single person - even identical twins. Therefore it's not unreasonable to suggest that we all need a variety of treatments - what works for some, may not work for others."

Thanks for detailing what you have learned in researching your condition and experimenting to find out what will work for you and what won't. Maybe some of your experience as you've outlined it will be helpful for other patients with similar challenges.

I've gotten used to the occasional eye roll, xchocoholic. And, as Liverock and Vicki have already talked about, I really am not concerned by it, because I have been getting healthier these past several years. As long as I am getting better I have no problem with what other people might think is good, bad, weird or whatever.

Esther
Not quite sure what your point is, there is hardly any 'scientific' evidence for most treatments by CFS practitioners. Most have a 'try this and see if it works' attitude and learn what has worked for their clients over time, this the way that even the most famous CFS practitioners work, ones charging $500/hr and charging an arm and a leg for countless tests.

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Some more than others.

These two: "vitamin B12 (methylcobalamin), omega-3 oil " are a standard part of treatment for MECF among the few MDs who specialize in it. There's reason to believe they might work, within the very limited understanding available about the biology about the disease. There's also experience with both of them in medical practice. Due in no small part to the hostility of CDC and NIH, there are no clinical trials for either for use with us.

But that's still more than a guess of "hey let's try something I saw on TV/the net/Natural News". While we have very little for effective treatments, there's a difference between pure random chance and you or your doc trying something because there is some shred of evidence that it can and does work.

"learn what has worked for their clients over time"
That's a big part of what an MD attempting to help us has to do, but they need to be able to distinguish "it seemed to work" due to the random variations we have with no intervention at all vs "It does work better than doing nothing". That's hard with us, as small improvements are subjective and can be set off by removing a bit of stress or by reporting bias - we hope x works, so we may decide "I'm 15% better" when there's no underlying change. Certainly if we get much better or worse it's unmistakable; but it's very hard to detect methods that help somewhat but not dramatically.

So, while we have very little science to go by, that doesn't mean we need to try shaking a vial of special water then drinking it -my landlady insisted that would cure me. Nor do we need to chase after other such things for which there's neither some reason to believe it might work nor a history of it working for people with our condition.

I can understand why some patients who are desperate for answers try to remain open-minded and willing to try anything with attitudes of "try it and see", "what works for some may not work for others", "what's the harm in trying", etc.

However, after having my health (and others) apparently got worse on multiple occasions after trying what in hindsight was either CAM quackery or based on vague evidence related to CFS, I realized these attitudes can also cause harm.

Even when I took charge of all the research myself, it ended up in failure, possibly because my body has already been somehow broken from all the previous quackery I put it through and now it seems overly-sensitive or non-responsive.

Now I simply refuse to try anything new without a solid reason backed by good scientific evidence. It is simply a matter of preserving whatever limited health I have left. I may be waiting years or even decades for such science, but I am not willing to take those risks I used to (at the time they did not seem like risks), and I am certainly not going to be fleeced $500/hr and an arm or leg for the privilege of being a guinea pig for "CFS specialists" who are basically groping in the dark.

HowToEscape? raises a good point about whether apparent successes can be accurately attributed to the treatments attempted at the time. Perhaps apparent harmful effects can also be difficult to accurately attribute to specific treatments too, although warrants more caution than successes. I have also heard of or know people who are always trying something new for their health problem, despite previously swearing that whatever they were trying last time had solved their problem.

Very difficult to measure any treatment against what is for some - and perhaps best described as - 'natural recovery through doing little more than adopting methods of illness management'. We have very little knowledge of any disease process to measure things against. We don't know if what is happening to me over the past decade and more, is the same as what is happening to e.g. @biophile or anyone else under this symptom-based diagnosis.

My parents both have arthritis. Dad isn't diagnosed, Mum is. Both swear by their copper bracelets. I am sure if I looked I would find 'evidence' to support their use. But at the end of the day the more important thing for them both is - in my view - that they believe these copper bangles help, and that without them the aches and pains are worse. Try convincing them there is no scientific rationale behind these 'treatments'

In the past 6 years since my last relapse - aside from prescription drugs to help manage several symptoms - I have reached the stage I have through acceptance of my limitations, and a combination of what might be termed 'pacing' and 'activity management'. I still push against and exceed my limits but compared to where I was 6 years ago I feel I have improved. Noticeably if you ask my family.

My experience of acupuncture and other - and many - 'alternative therapies' was terrible. The only thing they did for me was empty my wallet and leave me feeling depressed. I had more claims of 'cure' from alternative practitioner than ever I have from conventional doctors. There was this overt 'hope' from alternative therapists that again conventional doctors never tried to push onto me as a means of 'buying into' their wares. Much more realism from conventional medicine. Much more 'I am sorry but we simply do not know'.

That said, on a personal level, I did find great pleasure from gentle massage - but then I always have. However when I was finding it so very stressful, I found massage and aromatherapy to be great for me. I have to wonder - based on my experience and it was pretty vast in those early years of desperation - whether the alternative therapies achieve more 'success' because of this ability in some cases to aid relaxation more than anything else.

Well that and the belief that something is working, which at the end of the day, is really no different I suppose in my belief that my drugs - that are not specific to ME - are helping manage some of my symptoms.

Bottom line: if it helps you then great but just don't think that it is something that holds the key to ME or can be as helpful for others who share this diagnosis.

Still. It is very interesting reading of everyone's experiences and the way in which they approach life with chronic illness.

If you don't actually know what the problem is, and we certainly don't, trying to fix it by "adding" things seems a lot like starting with a can of paint of an unknown color, and adding a bunch of colorants to it expecting to get the color that you need. The odds of getting the color you need isn't very good. I personally have a 30 year rat hole littered with things that supposedly "worked" for someone or other, but made me worse or did nothing at all. We so desperately need Dr. Lipkin...

Thanks for this article. Very good. I will look into the sinus cure further as that is something i was currently looking for. I can't use a neti pot. Ver sad about the couple of people who died though extremely rare.

I actually find ear acupuncture extremely helpful. I use a ball point pen top.